Geoffrey Clifton-Brown calls for the NHS to use state-of-the-art IT to digitise patient records and allow clinicians to harness the power of such valuable anonymised patient data to identify new treatments, effective new drugs and even repurposed drugs that can have major benefits for sufferers of rare or life-limiting diseases.
That this House has considered use of digital records in the NHS.
I am delighted to serve under your chairmanship, Mr Wilson, and grateful to you and Mr Speaker for the opportunity to debate this matter. I am delighted to see my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe) in his place.
The issue of data is of transformative significance for the NHS. The health service has so many interactions with patients on a daily basis that it creates an enormous amount of health data that have a huge number of practical applications for those who know how to analyse the data correctly. With more patients being treated, more work being done on access to drugs, and massive breakthroughs in genomics and the study of rare diseases, the NHS must use IT effectively to digitise patient records and allow clinicians to harness the power of such valuable data. That is the essence of this debate.
My involvement in this subject area began through my late constituent, Les Halpin, who was diagnosed with the dreadful motor neurone disease in 2011. Les was one of the country’s foremost statisticians by profession, and a gifted mathematician with an inquisitive brain. He quickly realised that the numbers were stacked against him—when I first met him, he was absolutely clear that he had between a couple of months and a couple of years to live, about which he was absolutely stoical—and furthermore that the money spent on new drugs was widely out of kilter with the output.
Rather than take on the treatment of and research into MND directly, as that was already catered for by a number of non-governmental organisations, Les set his sights on tackling the system more widely. Understanding that the system he wanted to change was governed by the regulatory and political world, he began the Empower: Access to Medicine campaign. As a statistician, he knew better than anyone that it is information that furthers medical research. Empower taking on this debate is therefore the logical extension of his original work. Les died while on the waiting list for new treatments, for there had been no new treatment for MND for more than 20 years.
Through comprehensive engagement across Government, industry and the academic world, Empower helped to secure a major positive change for patients, known as the early access to medicine scheme. Working with a number of patient and medical campaign groups—Joining Jack, the Duchenne Children’s Trust and the Genetic Alliance UK, to name just a few—Empower hosted a summit in the House of Commons, at which the Department of Health launched its new early access scheme, with Empower’s support.
On 23 February, I hosted the parliamentary launch of Empower: Data4Health—my hon. Friend the Member for Bury St Edmunds (Jo Churchill) was present; perhaps other Members were as well—which is the next stage of this work and falls under the subject of this debate. The new campaign brings together politicians, clinicians and patients and calls for an NHS that uses state-of-the-art IT to collate and analyse health data to improve outcomes for patients. The campaign is a natural continuation of Les’s work, because it seeks to create an NHS that uses anonymised patient data to identify new treatments, effective new drugs and even repurposed drugs that can have major benefits for sufferers of rare or life-limiting diseases.
To my mind, there are three ways of deploying this IT effectively in the NHS—this is part of a wider debate, but it is worth mentioning here. First, with the right technology, data can be analysed for particular cohorts of disease sufferers to look for trends, monitor the effects of new drugs treatments and therapies and, ultimately, improve patients’ information about their own conditions, patient outcomes, and access to medicines or other treatments that are right for them.
Incidentally, we are seeing growing evidence of repurposed drugs being used to treat a variety of diseases that they were not originally intended for, with some success. For example, recent research suggests that some statins—drugs generally used to control cholesterol—can affect the treatment of brain tumours. Before such research can be turned into real treatment options for patients, we need to be able to use modern technology and digital records to flag where patients are receiving that treatment and look at the effects across a much larger cohort.
The potential offered by using IT to identify new treatments and trends could fundamentally change how the NHS operates. Indeed, the Science and Technology Committee recently reported that the value of big data to the health sector will equate to £14.4 billion by 2017. In fact, some consultants have found that efficiency savings between £16 billion and £66 billion could be generated in the NHS were the data deployed properly.
Once we start to use data, we can leverage the value of the intellectual property, which is created in a number of ways, by using it to incentivise GPs or clinicians to pursue certain treatment paths; by funding patient interest groups and other bodies; and, ultimately, by selling the IP to drug companies to speed up the development of new drugs. The whole thing then becomes a virtuous circle.
The second key benefit of IT and digital records is that they enable us to address the lack of co-ordination in the NHS. Clinicians will be able to monitor what is happening to a patient cohort for a particular disease across the country, rather than re-invent the wheel when approving treatment. Digital records will enable different teams to co-ordinate across one or a number of hospitals, synchronise appointments and ensure that all clinicians are fully informed of how their treatment is interacting with a patient. That should lead to the best possible outcomes for patients, and enable co-ordination across the health service.
Thirdly, patients will have more control over their own health information. In an age in which the use of medical self-diagnostic tools is on the rise, patients will be able to control—possibly remotely or at home—the data produced by the diagnostic machines; view it in whatever form they like; use it to inform their self-care; and feed it remotely, through IT, back to clinicians, who if necessary can modify the patient’s treatment. Treating people remotely will prevent unnecessary hospital visits and visits to clinicians.
Fourthly, once we start collecting data on patient outcomes, we will be able to drive processes within the NHS, identify things that are taking too long and work that is being duplicated, and ultimately save the NHS money on its day-to-day processes and tests. For example, we will be able to transfer huge amounts of data across different systems in the NHS. New patient tests are emerging almost weekly, which produce data that can be transferred across different parts of the NHS more efficiently. In those four ways, IT can transform the NHS.
Members from all parties, members of the public and clinicians have concerns about data privacy, and I would like to tackle that point head-on. I thought that some Members might be here to speak about their concerns about privacy and data protection. Some of those concerns are serious and legitimate; it is no use pretending that they are not. We all hear horror stories from our constituents about NHS trusts mishandling data, losing records and sharing inappropriate information. When this debate was granted, a member of the public contacted me to bring to my attention his experience of massive data breaches by one NHS trust, which is alleged to have consistently failed to adhere to data protection principles and to have hidden its failings from NHS England. Make no mistake: concerns about the handling of patient data are very real.
That member of the public highlighted that data protection breaches are regrettably already taking place. One of the purposes of this debate is to highlight the need for a national framework for digital records with built-in safeguards to protect patient privacy, and for genuine national accountability for trusts. We need to generate a debate on that subject. No patient record system is absolutely secure. Even the old-fashioned paper system is not absolutely secure, because it can leak: people can get into files, access the data and pass them on in an unauthorised way. With modern technology, we ought to be able to protect patient records.
Digital records may ring alarm bells with some patients, such as that member of the public, so it is imperative that the Government develop a comprehensive public information campaign on the enormous treatment benefits, which I have outlined, that health data can provide. We must convince the public that the benefits of the effective use of IT in the NHS far outweigh the potential obstacles and pitfalls that there may be along the way. We have the technology to keep patient data safe. A fear of errors should not paralyse progress on this issue.
There are some great examples of things happening across the country. For example, the Cystic Fibrosis Trust has done incredible work in putting together a patient registry of more than 99% of all cystic fibrosis sufferers. As I am sure all Members realise, cystic fibrosis is a horrible disease. Babies born with it cannot breathe properly and need continuous treatment for the whole of their often only too short lives. The first new-generation genotypic drugs are beginning to be introduced, and by using patient data to measure their effectiveness and possible side effects we can begin to make real progress on rare diseases such as cystic fibrosis.
The Cystic Fibrosis Trust operates a strict evaluation process, overseen by a committee of experts, to ensure that its registry data are used in line with patients’ consent. It is interesting that those with that debilitating disease realise the effect that IT can have and have willingly given permission for their data to be used in that way. That is an example of the importance of patient buy-in to IT patient records. Thanks to the Cystic Fibrosis Trust’s determination to promote and maintain its registry, we are seeing new treatments for particular strains of CF, which completely alleviate the dreadful symptoms that I outlined in young babies, who would otherwise die prematurely, and enable them to live a relatively normal life. Proper deployment of IT in a digital NHS would enable us to develop similar drugs for suffers of all sorts of rare and debilitating illnesses.
A shining example of what I am outlining is happening in Birmingham, where clinicians are trailblazing in this area. They are an example of what we hope will happen nationally. The University Hospitals Birmingham NHS Foundation Trust uses electronic patient records. Since 2011, all records have been electronic. Its commitment to innovation has allowed for some remarkable projects, such as Cure Leukaemia, which was established in 2003 to enable patients with blood cancer to access effective new treatments. In 2005, it helped to secure a £2.2 million grant to build the Centre for Clinical Haematology at the Queen Elizabeth hospital in Birmingham. It resulted in the development of the second-largest adult stem cell transplant programme in the United Kingdom. The impact of Cure Leukaemia and the Centre for Clinical Haematology in Birmingham is closely linked to the distinct make-up of the west midlands and the fact that they use IT in the way that we propose. With a population of 5.5 million and the most ethnically diverse catchment area in Europe, the west midlands offers access to the broadest possible data pool for drugs trials.
Over the past decade, Cure Leukaemia has funded a network of 15 specialist nurses, who work across the west midlands and administer pioneering drug treatments to leukaemia-suffering patients. The combination of the west midlands’ unique demographic and the network of well-supported nurses has enabled us to leverage millions of pounds worth of pioneering drugs and give patients access to clinical trials for drugs not readily available in the rest of the NHS. Cure Leukaemia’s founder, Graham Silk, is also a member of the Empower: Data4Health campaign. Graham’s hope is that, one day, everyone will be able to benefit as he has from the amazing work being done with digital records in the west midlands.
The medical community see the advantages that digital records can bring to the NHS. The Royal College of Physicians believes:
“Fully digital patient records will bring benefits to the NHS, but to do so they need to be based on standards for the structure and content. Common standards are essential to enable interoperability between digital records in different care settings.”
The RCP goes on to list the benefits that digital records can bring, and I will take them in turn.
First, digital records have the potential to improve the quality of patient care. The people at the RCP believe that, with fully digital records, it will be
“easier for care professionals to bring together a person-centred view of the patient from all the disparate records held in different settings and over time. They believe digital records will improve communication between professionals in different care settings and that it will be easier to drive timely, relevant automatic clinical alerts. They believe that digital records can improve safety by reducing errors in transcription of paper documents and they are of the opinion that it will be easier for patients to access their records for self-care purposes”—
something I have already outlined.
The second major benefit comes in NHS quality improvement and research activities. That is very much the key theme of my speech today. The RCP states that digital records could provide:
“Much improved ability to carry out records-based research (with appropriate protection of confidential data and respect for those who wish to opt out)”—
my buy-in point—
“and support for the development of stratified medicine which enables doctors to provide patients with specific treatments according to individual needs. It requires the collection of genotype (information on an individual’s genetics) and phenotype (lifestyle and environmental information) from patients.”
The final benefit that the RCP highlights is the potential cost saving. With the NHS under increasing pressure, because of a variety of factors, the importance of opportunities to do more for less, while protecting patient outcomes, should not be dismissed. The RCP believes that the potential cost savings could come from reduced duplication of test orders and unsuccessful treatment, fewer errors and reduced time spent on searching for missing paper records.
I want to give a powerful example that really sums up what this is all about. Using IT and patient data to improve access to breakthrough treatments and personalised medicine is, fundamentally, about patients who are looking for answers and for some hope, not only for themselves, but for everyone in a similar situation. At this point, I want to mention a remarkable woman from my constituency, Christiana Knudsen. Christiana can explain her situation and her journey far more effectively than I ever could. If you will permit me, Mr Wilson, I will read the words she sent to me:
“The unusual aspect of my situation is that I am relatively young, midforties, and otherwise very healthy, sporty, have a positive mindset and have no cancer in my DNA. Where the illness originates from is a mystery (I personally believe it is from emotional stress from an unusually challenging childhood) and like many cancers, it seems to have been unprovoked. Unfortunately, we do not yet have a nationwide dataset of patients with ampullary cancer that could be used to cross-reference symptoms and treatments. This would, in my case, be a vital resource. It would not only allow doctors to help pinpoint the cause, but also make an informed decision on my treatment according to what has worked well with other patients who have suffered from the disease and who have similar attributes to me.
Ultimately, I am getting a feeling that I can turn this into something different. Perhaps I can use the situation in a positive way and be an inspiration to others. There’s no point in just going downhill with it, so I am slowly thinking that I could create a new reality around my predicament. One that would depend on my surviving this as best as possible, and showing the rest of the world that you can go through this and remain strong and positive, perhaps even overcome it. Apparently no one has beaten the particular cancer that I have, so why not try to reverse the statistics and make this into a first?”
Extraordinary! We can all agree that the drive to turn the experience of such a terrible illness into something positive for others, as Christiana and Les have done, is the hallmark of someone truly heroic. When we think about the obstacles that we face in getting a fully digital NHS, and the potential pitfalls along the way, we need only think of Christiana and Les, and the many patients like them who will benefit.
To conclude, effective use of digitisation in the NHS heralds the possibility of a complete transformation in how health services are delivered. This is one of those rare moments in human innovation when we could make a step change and deliver much more, for significantly less, on a permanent basis. We should, therefore, seize the opportunity with both hands, without delay.
Thank you for the opportunity to respond to the debate, Mr Wilson. I start by congratulating the Backbench Business Committee on granting it and my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) and the others who have spoken. I will say more in a minute about the points that they made, but it is incredibly timely to be having the debate now. I am grateful to the hon. Member for Bristol South (Karin Smyth) for her long list of questions, which I will do my best to plough through. If I miss anything, I will happily write to her to deal with it, particularly on one or two of the more detailed questions.
I genuinely thank my hon. Friend the Member for The Cotswolds for bringing this subject to the House. Although it perhaps is not a topic that is discussed down the Dog and Duck, many of the issues that it speaks to are discussed down the Dog and Duck—modern healthcare, research and the NHS’s role in helping to find new cures. My hon. Friend has been a doughty advocate of this subject in the House, not least in his advocacy of the Empower: Access to Medicine campaign on behalf of his late constituent, Les Halpin, who has been an inspirational figure to him and to many of us.
I also thank and pay tribute to my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who has made a reputation very quickly in the House on the subject of medical research as a double cancer survivor herself and as a passionate advocate of how we can accelerate innovation in the NHS and harness the NHS as a catalyst for innovation and accelerated access to new treatments and drugs. My hon. Friend the Member for Twickenham (Dr Mathias) brings to the debate considerable professional expertise, as well as the passion with which she has spoken here this afternoon and elsewhere in the House.
The hon. Member for Bristol South gave a genuine signal of bipartisan, cross-party support for this broad agenda, which is extremely welcome. There are issues in the House on which it is entirely appropriate for the Government and the Opposition to knock seven bells out of each other. It is the Opposition’s job to oppose and ours to govern, and democracy would be ill served if we did not, but there are topics on which it is in the public interest that we seek agreement, and medical research is one of them. Indeed, in this Chamber on Monday of last week—it seems like a month ago—we had an incredibly packed debate, perhaps the most packed debate in Westminster Hall ever, on brain tumour research. The House was speaking with one voice, and I was delighted to be able to respond, surprise some and launch a working party to take forward the points that were made.
I thank the hon. Member for Bristol South for her signal of support in principle. That is heartfelt because this agenda—the use of data in a 21st-century health service to accelerate the search for cures and to prevent unnecessary suffering from tomorrow’s diseases and those that we do not have treatments for today—is precariously at risk from badly communicated policy and a media, public and political discourse that sometimes misses the detail of how data are actually being used. It is all too easy to jump on a bandwagon and launch a campaign to say, “No data to be used”. That would profoundly betray those who are suffering from disease today who want their experience to help to prevent disease tomorrow, and the pioneering clinicians, doctors, academics, researchers, charities and patients who have done so much to demonstrate the important role that data have to play in research. I therefore genuinely welcome the hon. Lady’s support in principle. I respect that that means she wants specific questions answered, and I will do my best to answer them.
I want to set the scene as to how and why the debate has come to a head, why the digitalisation of the health service and the use of data in health have become so topical, and why we have reflected that through the creation of this new ministerial role in the Department of Health. As the first Minister for Life Sciences, with responsibility for all of digital health and health data within the Department, I want to say something about the Government’s fundamental commitment to securing and safeguarding public trust and confidence as the bedrock of the digitalisation of the NHS. I will then say something about the commitments that we have made to that programme and the timetable and funding for it. I particularly want to pick up on the question of electronic health records, on which my hon. Friend the Member for The Cotswolds has rightly focused today’s debate, and how we see the electronic health record revolution in this Parliament and beyond transforming the three key pillars of the debate: individual care, system safety and performance, and research. When people ask why we need data, those three pillars are my first three answers.
I came to this agenda from the research end, after a 15-year career in biomedical research. In the past 15 years, the power of informatics—the power of applied computing—has come to transform how drugs are discovered. I am talking about individual data on the deep history of a patient’s journey through disease—their genomic predisposition, their clinical records and the way they react to different drugs—but also, on the other axis, about large-scale, anonymised cohort studies of patient experience. We can look, for example, at diabetes patients; why do 80% of UK diabetes patients respond in this way and not that way? A combination of large-scale, anonymised cohort studies and individual, in-depth personal patient histories can change, and indeed is changing, the way drugs are discovered.
I have seen with my own eyes in the industry how, in the last 10 years and even in the last five, work has very quickly come back to clinical assets and to starting the process of discovery with patients—with tissue, with data, with the clinical, human experience of disease. Understanding how different patients live with disease and respond to drugs is the starting point for research. The way the industry worked when I first joined it was that one would start with a theoretical, academic target for a possible drug and then go through an expensive 15-year process—it would now cost $2 billion—of long-term academic work followed by the pre-clinical stage and phase 1, 2, 3 and 4 trials, only to discover in about 80% of cases that the drug did not work in people. The industry is rapidly changing, to start with the experience of real people with real disease and to understand how disease takes hold in real people in real time.
One of the many benefits of this revolution is that we will reduce our dependence on animal tests. There will always be a need to involve animals in research, but we can reduce that need to an absolute minimum. The more we can start with data and an understanding of how particular patients respond, the more we can dramatically accelerate our search for both diagnostics and treatments.
As I said, I came to this agenda from the research end. Research has been significantly accelerated in this country over the past 20 or 30 years, for instance by the creation of the National Institute for Health Research and by the work of Professor Dame Sally Davies, the chief medical officer, in funding and setting up our clinical academic research centres. It is my great privilege to be the Minister responsible for that £1 billion a year infrastructure, and for the comprehensive biomedical centres that we have set up. For the past 15 to 20 years, there has been phenomenal use of data in tertiary research hospitals to drive research and improve care.
In many ways, the aim of the programme that I will discuss in a moment is to spread out the benefits of that advanced modern healthcare, and the embedding of research in clinical practice, to the rest of national health service. For research purposes, the use of data is not an optional extra. It is an absolute fundamental. No researcher in the world would dream of trying to run a research programme without access to up-to-date data.
The programme is also about system safety and performance, and about individual care. If hon. Members have been to a GP clinic or a hospital recently, they will have quickly noticed that all the diagnostic devices and most pieces of treatment equipment are digital. Health is going digital. Conferences refer to digital health as if there were still analogue health, but health is going digital very fast, just like every other aspect of life. If the system is to give patients individual care, we have to digitalise it.
Any of us could, God forbid, clutch our chest, go down and need an ambulance. When the ambulance comes for me, I want the staff to have not a biro and a pad but an iPad. I want them to know my blood group, my allergies and my history when they get to me and when I go to A&E. Hon. Members might be amused that when I first gave a speech on this topic, I referred to a photograph outside my office in the Department of Health. It is an inspiring photograph of the NHS, there for us 24/7: a picture of a paramedic leaning out of an air ambulance over some remote island, probably in the Shetlands. A wave is breaking on the lighthouse, the poor patient lies in the heather waiting for the ambulance, and out of the air ambulance leans a paramedic holding a pad of paper and a biro. I said that when they come for me I want them to have an iPad, and the photograph was taken down within days of my speech, which was the first small sign of progress.
The important point is that we have set a target to ensure that electronic health records are used first in A&E, because that is where rapid response—getting the right drug to the patient—has the most dramatic effects. That is true across the care pathway. Most constituents say to me, “Mr Freeman, when I go from the GP to the hospital to the care home and back to the hospital, why do I have to repeat my diagnosis and my treatment history to the clinicians? Surely my patient record should follow, or even go ahead of me, through the system.” That point is very well made.
Most of my constituents desperately want individual care, so that the system knows who they or their loved ones are when they arrive. When somebody arrives at hospital after being referred by a GP, they want the hospital to know who they are, why they are there, what the referral was for and what the treatment is.
In many ways, we are catching up. The challenge is to catch up in a way that understands the pace at which healthcare is digitalising and seeks not to monopolise, but to provide an aircraft carrier—a mother ship—on which the exploding range of various digital healthcare products can land. I have mixed my metaphors in an ugly way there, but the challenge is to turn the NHS into a catalyst for leading and unlocking NHS leadership in digitalisation.
I totally accept the point made by my hon. Friend the Member for Twickenham that, in many ways, we are catching up and trying to provide a platform for leadership in a rapidly emerging space. In response to the point that she and my hon. Friend the Member for The Cotswolds made about the need for leadership in the NHS, I can confirm that NHS England is about to appoint a chief information technology officer. A major part of that function will be to be lead champion, to explain and to be a point of patient information in the NHS.
Through the creation of my role, we have for the first time created a single ministerial portfolio with responsibility for this area. Until the post was created, every Minister in the Department had a little bit of information and digitalisation in their portfolio, which in many ways was appropriate but also meant that there was no single point of leadership. Part of my mission is to ensure that the Department brings that together.
The three great pillars that require the quiet revolution of digitalisation include research and individual care. However, I want to touch on the third pillar, which is system safety and performance. The NHS is the fifth biggest employer in the world. It is an incredible public service and an incredibly complex set of organisations. We talk of it as if it were one, but under the national health service’s magnificent initials are a whole range of GPs, hospitals and care providers, which all operate independently within a healthcare system. We are building the railway tracks for patients’ records to move along, so that we integrate them. A fundamental part of that, in addition to research and individual care, is ensuring that the NHS can deliver an essential contract with patients in a 21st century health system. We have a duty to know where best practice is and where worst practice is. We should not have to rely on whistleblowers to put themselves at huge personal risk by sighting and highlighting worst practice. The computer will do it for us.
The other day, I looked at a piece of software that was developed—for a very small amount of money, by the way—by an Oxford academic. It shows prescribing data for one important class of drugs across the whole of NHS England. There is one outlier, and it happens to be in Norfolk, which is why I took a particular interest. It is clear that there is a very small group of GPs that somebody has not got the guidance to or rung up. I am sure that as soon as those GPs have the information, their prescribing practice will fall into line with the rest of the country.
That is computing power being used to promote patient safety and efficiency. The third pillar—system safety and performance—is important, and one of the lessons from the Francis report is that we need to use data much better to identify best and worst practice. When people ask why we are doing this, I suggest that it is for those three noble purposes, which support each other. The digitisation of the system should drive patient care, system safety and research, and the same datasets run between them.
Crucially, the Secretary of State and I understand that the whole digitisation programme has to be rooted and covenanted in deep and profound respect for public and patient trust and confidence. I am not revealing a state secret by saying that I am not sure that that has necessarily been the case until now, for a whole range of reasons, but partly because Government have seen digitisation as inevitable and, as my hon. Friend the Member for Twickenham suggests, slightly overdue, and therefore not something that needs to be announced. Of course, the Government are always coy about admitting problems, but I am not coy about saying to people that we are still running the NHS, in large part, on paper and cardboard, which is a problem that needs to be solved.
Unless we describe the problem clearly, we will not carry the public with us in solving it. My magnificent local hospital, the Norfolk and Norwich, has a data repository with 10 miles of shelving on which patient records are kept, held together by treasury tags and paperclips. I do not know about other Members, but I am not prepared to say to my constituents that that is an appropriate way to store their information and, indeed, my information, my mother’s information and my children’s information. Each hospital separately stores records of which patients came to it and when, which does not speak to a properly joined-up system. It is a national health service—the clue is in the name—and when someone clutches their chest in an unfamiliar bit of the country, they expect the national health service to know who they are. That is one of the benefits of a national health service. From the point of view of properly integrating, we need to explain to people where the current system is not able to deliver.
It is for that reason, and because we want to carry public trust and confidence, that the Secretary of State and I are shifting from what I crudely characterise as an agenda that, to the extent that it has been discussed publicly, has been called long overdue, essential for the running of the system, and something that patients do not need to worry too much about. Well, we only have to say the words “big data” and “big government” to most people in this country for them to be alert to the risks of what might be happening behind their back. I am trying to do it differently by saying to people “This is an urgent, overdue, phenomenally exciting and complex project that we are doing in the interests of patients,” for the reasons I have just set out. Public trust and confidence are essential to the project, and I am not revealing any state secrets by saying that NHS England’s care.data consultation last year did not demonstrate global best practice in consulting patients. It was a well-intentioned leaflet that was sent to every house, which of course does not mean that every person in the country read it, and for many people the wording was as confusing as it was enlightening. That is one of the reasons why the Secretary of State and I have gone to such lengths.
We have appointed the first ever national data guardian in Dame Fiona Caldicott, a widely respected expert in the field, to advise us on the right protocols and safeguards for ensuring that public and patients can have trust and confidence in the system. Dame Fiona has carried out an extraordinarily detailed piece of work, and her recommendations will be landing on our desks imminently. She has considered the whole range of issues, including consent; how many data should naturally flow in the system for it to function; which data transactions should be subject to additional patient consent; what the standards should be; and what the relationship between the various bodies should be in terms of accountability. That work is very important.
We have gone further and asked the Care Quality Commission to carry out a major piece of work on best practice in the system today and to set a benchmark so that we can hold the system to account. We have set up the digital maturity index, and this spring each clinical commissioning group has had to report, for the first time, on the level of digitisation in its local health economy, and we are building that into the CCG annual assessment framework so that people will be able to click on My NHS and see heat maps of the extent of digitisation across the country, which will help us to identify best and worst practice and to accelerate the roll-out.
We have also appointed Professor Bob Wachter, the American digital health expert, to come over and help us consider the cultural issues of ensuring that the NHS is properly training and supporting practitioners. It is about the human element, because we can have as many systems and technologies as we want, but it ultimately comes down to culture, practice and patients’ records being respected and treated appropriately by the system. I hope Members can see that we are taking seriously the need to put in place a series of measures that carry public trust and confidence.
Putting information in the power of patients and their loved ones, in the same way as in banking and in all other important aspects of our lives, will pay huge public health benefits, with people using information and data to drive lifestyle choices. Indeed, Members are already seeing that. One of the ironies of this space is that some of the most rapid digitisation driven by patients is by the so-called “worried well”—those who take their healthcare seriously and are using Fitbits and other devices to monitor calorie intake, exercise and sleeping patterns to keep themselves out of hospital. The system should use those technologies to try to deliver better care, and we want to integrate the two so that more and more patients are able to harness such technologies to empower themselves. Ultimately, the Secretary of State and I want to get to a point where that transparency and empowerment drives the relationship with healthcare recipients, as healthcare citizens, choosing where to have their surgery and holding the system to account. Intelligent digital transparency is the greatest driver of a modern healthcare system so that every day, every hour and every week the massive diagnostic and treatment footprint of the NHS is mapped digitally, allowing patients to know that they are actually controlling the system, which is there for them.
Some clinicians, particularly GPs, take a different view—that the sovereignty of their relationship with their patient means that their patient’s data belong to the clinician, which is an interesting point. Most patients feel that their data belong to them and that they should have access to their data. There are ethical issues, as well as the question of the appropriate relationship between clinician and patient, and in no way do I want technology to get in the way of, or to undermine, that sovereignty. Indeed, the clinicians to whom I speak say that the digitisation revolution allows them to focus their professionalism and judgment on what really brought them into clinical practice, which is dealing with their patients, while the computer does what they no longer have to do—recording and accessing in a split-second all the information the clinician needs to make their judgments. Technology can support that relationship, rather than undermining it.
I want to make the point that the covenanting of public trust and confidence is completely central for the Secretary of State and me. We want to make sure that the public have faith and confidence that we are not in any way playing fast and loose, and I hope that the measures I have announced will go some way to underpinning that.
We have also gone further. People have been concerned about the selling of their data for purposes beyond healthcare—commercial purposes—particularly those that may prejudice their eligibility for healthcare. We have not only made it clear that that is unacceptable; we have made it illegal and imposed a substantial fine and penalty on it. We need to use data but we need to use them appropriately, and we need patients and the public to know that that is our commitment.
On the commitments that we have made, we have secured funding from the Treasury for the completion of the paperless NHS 2020 project, which the Secretary of State has set out in other speeches in some detail. It is a £4.2 billion funding commitment, and in the past few months, since the completion of the comprehensive spending review, officials in the Department of Health, in NHS England and in the Health and Social Care Information Centre—which I recently announced is to be renamed NHS Digital—have been working on a complex work plan for seeing this through. It comprises 26 workstreams in six domains, and we are very committed to making sure that this is properly managed with clear milestones and clear accountability procedures. The project is complex and some things will not go according to plan. We need to make sure that we are on top of that and bringing the very best levels of management to that project.
I want to cite one or two examples of where we are profoundly leading in this space. One is a project for which I have ministerial responsibility—the 100,000 Genomes Project in which we are sequencing the entire genomes of 100,000 volunteer NHS patients, and combining those with hospital data to form the world’s first reference library for genomic medicine. All the information is consented, and the project represents a pioneering showcase of the use of data in 21st-century health research. We have also launched a genomic medicine service in the NHS through the 13 genomic medicine centres. We want the NHS to pioneer genomic diagnosis and treatment, particularly in cancer and rare diseases. It is a shining informatic and digital data programme as well as a genetic science programme.
I also want to highlight a project that I recently saw, which goes to the other end of the spectrum: the day-to-day management of disease. It is a diabetes service pioneered, to my great joy, by Litcham surgery in my constituency. It involves patients self-monitoring their blood sugar levels, and barcode and digital transmission of that information back to the GP practice. I went to see it in use. Patients go to the consultation and the nurse comes with their data, which is used to monitor their precise condition. That leads to the use of the very latest drugs in ever-more accurate precision dosing and comparative data across all participating GP clinics, which drives up standards. It is a brilliant example of data being used to improve care and the use of novel and precision medicines in the NHS.
The other example I want to cite is an inspiring example set up at King’s College London by Professor Simon Lovestone: the case register information system in mental health and psychiatry, which is a difficult area of research, as colleagues know. It puts together patient records from across the 250,000-patient catchment area of South London and Maudsley and combines them with MRI brain scans, the digitisation of patient medical records and very complex drug histories in mental health, to build the world’s first reference database for trying to understand the causal mechanisms for complex psychiatric disorders. It has attracted phenomenal industry co-investment alongside the NIHR centre of excellence and is a shining example of how we can use information and data to drive both research and improved care.
On electronic health records, which are important and which this debate was focused on, the ultimate goal is to have a system in which our individual health records flow seamlessly across the system in advance of patients. That is the goal of the paperless NHS. We have set out a series of specific commitments—I can write to the hon. Members here about them—for this year, next year, 2018, 2019 and 2020. They set out clear targets for how the electronic health record will be used and brought to bear—percentages of penetration in A&E, in the ambulance service and then mainstream across the service.
My hon. Friend the Member for The Cotswolds makes an important point. We need to identify some early uses of electronic health records, which may not be comprehensive and universal, and put this benefit in the hands of patients as quickly as possible. One of my missions is to ensure that we get some basic but powerful uses of electronic health records in iPads, phones and devices, so that patients can see their experience beginning to improve today.
I understand the point that the hon. Lady makes about the service being under pressure, which it is. The demand for healthcare is exploding, and NHS England has set out in the “Five Year Forward View” that digitisation and the greater use of technology is essential to reducing unnecessary pressure on the system. It has forecast that in 2020 we will be looking at £22 billion of avoidable costs from hospital admissions, from bureaucracy, and from paperwork. How many of us have had a diagnosis and received three or four, sometimes five, letters all saying slightly different things? That is incredibly wasteful and expensive.
NHS England itself has identified the fact that if that technology is properly implemented it can play a part in driving efficiency. However, I do not underestimate the extent to which that requires investment—which is why we have front-loaded it—as well as capacity and the ability to integrate. That is a challenge. When those systems are put in place in the private sector, huge numbers of people and huge amounts of resources are devoted to driving the integration properly. I would expect Dame Fiona’s review to touch on that, particularly in relation to training, and organisations’ culture and capacity.
However, things are happening. I want to share the data. More than 55 million people in England now have a summary care record. That is 96% of the population. As to how many are aware of that, it is an excellent question. How many of us have obtained access to our summary care record? That is important. Eighty-five per cent. of NHS 111 services, 73% of ambulance trusts and 63% of A&E departments now use the summary care record, and by April next year more than 95% of pharmacies will have access to it. By 2018 clinicians in primary care, urgent and emergency care, and other key transitions of care context will operate without paper, using the summary care record.
Several colleagues have touched on the question of apps today. We have clearly set out, through the National Information Board, a commitment to ensure that there are high-quality appointment-booking apps, with access to full medical records, from this year. NHS England and NHS Digital are working with GP system suppliers and third party app developers.
There is a major programme of work on apps, led by the NIB. That is to create a framework in which approved apps can be launched on the NHS Digital system. They need to be approved, so that patients have trust and confidence that they are verifiable and appropriate and can fulfil the claims they make. Ultimately we see NHS Digital as a major platform for sponsoring and developing those apps. We are not alone in that. There are stunning international examples. Estonia launched its electronic health record in 2009 and it is worth having a look at what it is doing. The US Veterans Association provides an integrated in-patient and out-patient electronic health record for VA patients. I will be in Washington in 10 days to look at that system again. Denmark is doing some extraordinary work, with more than 45% of patients now contacting their GPs digitally and using digital technology.
In accordance with your strictures, Mr Wilson, I will cease to set out the Government’s programme. I shall happily write to all those who attended the debate—particularly in response to the questions raised just now by the hon. Member for Bristol South about GP funding and what streams funding is coming through, as well as any other questions that I have not had the chance to answer. Once again I apologise for being late; I had no idea that the timing of the debate had changed. I hope that I have addressed the points that were made.
I believe—this is where I started in the debate—that some of what the Minister has told the House this afternoon reveals amazing progress in the NHS, which a public information campaign could show. I bet that very few people know that their local pharmacy could have full electronic access to their patient records, so that they could go in and say, “I’ve got this problem,” and the pharmacist could answer, “I am able to access your patient records if you give me your NHS number.” I assume that is how it works. The pharmacist could then look at the data and say, “You have been on a particular drug, and for your condition you should go and see your GP,” or, “There is another drug that would suit you better.” That sort of decision making would keep more patients out of their GP surgery and A&E and would have a distinct impact on the NHS, because it would reduce costs. The whole tenor of the debate has been to show that the NHS can be transformed by better data use—as the Minister’s Parliamentary Private Secretary, my hon. Friend the Member for South Basildon and East Thurrock (Stephen Metcalfe), said—by being able to store data properly and get access to them at a later date.
The Minister will know that I have come to this issue from Empower’s access to information campaign, and the idea of its being possible to use the data across a particular cohort of patients. I used the example of the Cystic Fibrosis Trust, 98% of whose patients are on a data record base. It can use the data to begin development of the drug for the next strain of cystic fibrosis. That is the ideal way in which the system should work.
I am grateful for the opportunity to speak. The debate will go on. Perhaps once the Caldicott report is published, and when the Government have set out how they may go about the public information campaign and the new Information Commissioner is in place, it would be appropriate for the House to have another, similar debate. That could perhaps be on a more mainstream day, when more Members could participate. The subject is so important that we should not leave it here.
Question put and agreed to.
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